More MS news articles for November 2003

Looking to the Future

http://www.msif.org/en/people_with_ms/get_involved/looking_to_the_f.html

October 30th 2003
MS Trust Conference, Harrogate, November 2003
Dr Alexander Burnfield MBBS DPM FRCPsych

People with MS have many different hopes and concerns about what will happen in the MS world in future years. Having been told repeatedly that “there will be a major breakthrough in MS research sometime in the next 10 years” many of us are becoming wary of these claims and are taking a more realistic view. There is no longer such a strong belief in the prospect of long term benefits from the new treatments, and some people with MS are cynical about the motives and financial imperatives of the pharmaceutical industry. But there is optimism about improving symptomatic treatments for MS and the work of MS nurses. An internet survey into the hopes, fears and realistic expectations of people with MS for the next ten years looked particularly at research, services and MS organisations. The final results from this survey are presented in distilled form.

The Survey

Question 1
What do you most HOPE will happen in the MS world in the next 10 years?

Question 2
What do you FEAR may happen in the MS world the next 10 years?

Question 3
What do you REALISTICALLY expect might happen in the MS world in the next 10 years?

Instructions

Please provide a short answer to each question paying special attention to
a) Research
b) Services
c) MS organisations

Total responses after six weeks ending August 2003:
335

Sample

All responses were noted, but about 20% were the most useful because they addressed each question in depth, often using several sentences in reply to each question. This was the sample used as a basis for further analysis and distillation. When answers were duplicated I have created a composite response, but in several cases wording has not been changed. Although responses came from throughout the world some are mainly relevant to the country of origin.

Analysis:

Q1 What do you most HOPE will happen in the MS world in the next 10 years?

Research

That the cause of MS will be found together with a cure of the disease
That environmental factors contributing to MS are identified
That there are greater levels of research into the origin of MS and that MS research generally is given greater priority
That research is focussed on what triggers MS in those with a genetic predisposition
That scientists should look again at some of the treatments used in the past by some societies as well as looking for new technologies
That a specific virus or other factor is isolated so that it becomes possible to prevent MS
That there is research into the effects of nutrition, food intolerance, diet together with emotional states in MS so that people are treated as a whole
That research deals with the question of whether MS is one disease or many with different causes, environmental or genetic
That a method can be found to prevent future generations developing MS
That stem cell therapy becomes possible for MS
That a way of successful re-myelination in MS is discovered together with repair of damaged axons so that established damage can be repaired and the disease halted or reversed

Clinical management

That a disease progression can be halted
That there will be a clearer understanding of the different types of MS and their different management
That effective treatments for progressive MS will be discovered
That diagnosis of MS will become easier with earlier detection, screening and treatment
That management of symptoms, exacerbations and complications will be improved
That standardised successful treatment protocols will be established
That medication becomes available orally rather than by injection
That the beta interferons and copaxone are made available and affordable to all who might benefit
That family physicians are better educated in the diagnosis and treatment of MS
That treatments like Modafinil (Provigil) be made available in Europe as well as in the USA to combat symptoms of fatigue
That experimental drugs like Antegren will prove successful in limiting exacerbations
That there will be ready access to an MS nurse with closer links to neurologists, physios, OTs, counsellors, complementary therapists etc.
That the medical profession listens to their patients and provides physio, counselling, information and advocacy
That the time from first episode to MS diagnosis is reduced
That the waiting time from diagnosis to prescription of disease modifying drugs is reduced

Social

That there is increased support for families of PwMS so that PwMS can function independently
That foetal testing to aid MS becomes legal
That PwMS can be assured they will be fully looked after if they can not work
That more awareness is given to the public about MS so that people do not just assume that MS means a wheelchair
That alternative and complementary treatments will be able to keep MS at bay
That there be more concentrated efforts on large or corporate sponsorship and funding for research
That there be better medical facilities for the young physically disabled coupled with access to a wider range of rehabilitation therapies – aromatherapy massage, reflexology , tai chi, acupuncture, beauty care, swimming pools and toning tables
That there be better funding for and provision of neurologists and skilled neuro-physiotherapists
That there no longer be a need to use an animal model of MS as a standard
That more emphasis be given to improving the civil rights of PwMS
That people will become more aware of MS and show more understanding
That marijuana is legalised for use in MS

Q2 What do you most FEAR will happen in the MS world in the next 10 years?

Research

That the cause of and cure of MS will never be found
That the long term use of disease modifying drugs is finally discovered not to reduce disease progression
That the long term use of disease modifying drugs will be found to result in significant adverse effects
That the complexity of MS makes a full understanding of MS impossible
That research into drugs takes precedence over an understanding of the underlying causes - such as food and other environmental factors

Clinical Management

That the invisible effects of MS like fatigue, bladder problems and pain, which are so important, will not be sufficiently recognised
That decisions about treatment are made by politically driven administrators rather than by trained medical personnel
That pharmacy companies and weak neurologists will push drugs that are less effective than they claim, for their own reasons
That MS research priorities will increasingly be driven by the academic ambitions of neurologists and the profits of pharmacy companies rather than by the needs of PwMS

Social

That politically driven budget cuts will diminish treatment and services to PwMS and families, and will then only be available to the rich
That the cost of health insurance will become too great for PwMS who will then be unable to access services
That MS will not get the publicity of breast cancer or AIDS and be neglected as a result, compounded by the comparatively low numbers of those who have MS
That fundamentalist religious groups will force a reduction in stem cell research and similar projects
That MS will not be regarded as important by the public unless highlighted by a media celebrity in competition with media celebrities with more appealing or “politically correct” diseases
That there will not be sufficient assisted living centres for young PwMS not wishing to live with seniors
That cutbacks in funding at Universities will lead to reduced MS research
That health service reform will be based on short term political expedients, like election prospects, rather than on the expensive and complex strategies that are really required
That the funding of MS research will cease if the pharmacy companies can not make a profit
That MS research is downgraded because of the cost of competing interests
That destabilisation on a world scale due to terrorism, famine, pestilence, new viruses, ageing populations or global warming will minimise interest in MS and its possible cure

Q3 What do you REALISTICALLY expect might happen in the MS world in the next 10 years?

Research

That science will be much nearer to finding a cure for MS
That there will be a much clearer understanding of the causes and triggers of MS
That we will have more useful data on disease modifying medications
That we will have more useful data on MRI technology and implications
That there will be significant progress in stem cell research
That there will be a major research development that will improve the quality of life for PwMS in the fields of medicine, technology or rehabilitation
That the peculiar scientist currently studying the mating habits of the Mozambique Tsetse Fly will fall over a cure for MS
That although a “breakthrough” might occur it is be best to remain cautious with lower expectations for the individual PwMS
That no cure will be found, but after more genetic research, a vaccination may be developed to prevent MS in the future
That research into the genetics of autoimmune diseases will lead to better treatments for MS
That a drug will be discovered that will repair myelin damage
That the level and scope of MS has now reached a critical point where a major development can become possible
That a dietary link will be found in MS
That cannabis will be legalised as a treatment for MS
That research will continue to be geared to the needs of the newly diagnosed and less disabled, rather than for the more seriously disabled who are at the life threatening stages
That a diagnostic blood test will become available

Clinical Management

That it will become possible to further reduce the numbers and severity of attacks in RRMS
That oral medications will replace injections
That treatments will be able to control or stop disease progression
That the current disease modifying drugs prove less effective than expected
That statins and other experimental medications will become an effective way of managing MS
That there will be major developments in technology that will help the seriously disabled
That little will change except the buzz words, theories and spin
That there will be better medications to prevent flare ups and disability with fewer side effects
That dietary and nutritional factors, together with stress reduction, will be shown to prevent the disease

Social

That PwMS will have more control over the course of their disease
Research will be reduced due to competing demands for funds
That PwMS will in future live more normal lives than is the case now
That PwMS will have better access to medical services, transport and financial support where currently lacking
That the MS World will teach us more about living with MS than scaring us with horror stories, and bullying us to take dangerous medicines that do not even work very well
That people will continue to get MS and not know how to cope
That research into hormones and herbal remedies would be productive, but will not be funded because they will not make money for researchers
That MS is an individual condition – until folks take responsibility for their own health and do not give their power to doctors we will see no change
That there will be a general slow increase in access to disease modifying drugs with the odd high profile government intervention when an MS issue has spin value (e.g. cannabis)
That there will be increasing fines for those not providing disability access
That there will be more neurologists able to work with PwMS and provide a better service than at present exists
That there really are such things as miracles… but I am not holding my breath
That MS nurses will be available to all and that the MS Society and the MS Trust will continue to fight for us, in a world with continuing health inequalities and where money has the biggest say

Implications

The survey provides a basis for further discussion in the various internet chat rooms and in face to face meetings. It is hoped that these will lead to further prioritisation of the results with most importantly fuel for local, national and international advocacy and action

Acknowledgement

A special thanks to the Multiple Sclerosis International Federation team in London who hosted the questions on the WOMS Internet site, and to the Multiple Sclerosis Trust (UK) for its support. But above all I am very grateful to the many people with MS from around the world who took the trouble to think about these questions and provide such a wealth and diversity of interesting answers